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UCL Queen Square Institute of Neurology

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Partners

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Over the years, we have had the opportunity to work with various partners, in the form of a collaboration or a sponsorship. We have worked together with ataxia patient organisations from different countries like FARA, GoFar, CureSCA, CureDRPLA, ARSACS Foundation. We have been funded by large funding bodies such as the MRC, NIHR, BRC, JPND, and the EC. At the European level we have been involved in an initiative with the European Brain Council (EBC)Ìý called the Value of Treatment project.Ìý

Accreditation Ataxia UK SAC

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The Ataxia centre was accredited by the patient organisation in 2005. We haveÌýalso received in 2023Ìýan accreditation for a paediatric ataxia clinic as a new service in our centre. To achieve accreditation, centres have to comply with criteria devised following consultation with patients with ataxia and clinicians with an expertise in ataxia, to provide 'excellence of care for the diagnosis and management of the ataxias andÌýaccess to a wide range of integrated services, as well as links to research programmes'. Ataxia UK has been a crucial partner and sponsor for the work achieved at the Ataxia centre from the start. Indeed Ataxia UK has funded several research studiesÌýat the centre and carry on supporting the research done here towards better treatment and better care for people with ataxia.Ìý

Ataxia UK logo

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The Ataxia centre is registered as the UK 'expert centre' for ataxias with the European Reference network for rare neurological diseases (). European reference networks (ERNs) are virtual networks connecting healthcare professionals around Europe with expertise in rare diseases which allows them to discuss a patient's diagnosis and care, with their consent, via an online ITÌýplatform. The network also aims to develop a comprehensive database to better understand these conditions, and create a platform for testing potential treatments. Prof Paola Giunti is the UK representative on the board of the network.Ìý

ERN-RND logo

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Our Centre has been recognised internationally and accredited in 2023 as Ataxia Centre of Excellence by the large patient organisation based in the US. We are the first centre in the UK to receive this accreditation. There are only six centres in the world (outside the US) to have this recognition.ÌýThis is a significant achievement for our centre, and we are now part ofÌýa network of Ataxia clinical experts that can provide support, guidance, and new opportunities for collaboration for improved ataxia clinical care and research globally.Ìý

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